What We Know About Calcinosis & How to Treat It
Medically Reviewed by Angela Chun, MD on February 9, 2026 and Belina Yi, DO on February 25, 2026. Cure JM shares medical resources to support informed conversations between families and their care teams. At the October 25th (2024) Town Hall, Dr. Christian Lood, professor and researcher at the University of Washington and Seattle Children’s Hospital, presented on […]
Home IVIG: A Family Perspective
Medically Reviewed by Dawn Wahezi, MD, MS on January 26, 2026. Cure JM shares family experiences to support informed conversations between families and their care teams. Intravenous immunoglobulin (IVIG) is a common treatment for juvenile myositis and other autoimmune conditions. IVIG can be administered in different settings, including hospitals, infusion centers, or at home, depending on a […]
Protected: Applying for Disability Benefits: What Families Living with Juvenile Myositis Should Know
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GEMs
Are you a JM Grandparent? Read more and celebrate our Grandparent GEMs here. GEMs is Cure JM’s monthly giving community. The name reflects a simple idea: Giving Every Month to provide steady, year-round support for children and families living with Juvenile Myositis. Monthly giving allows Cure JM to plan ahead, respond consistently to family needs, […]
Become a Grandparent GEM
Grandparent GEMS are grandparents who are part of Cure JM’s GEMS monthly giving community. Grandparents have long been the bedrock of support for children and families living with Juvenile Myositis. From the earliest days of Cure JM, grandparents have stepped in with steady encouragement, practical help, and faithful generosity. When grandparents choose to give monthly, […]
Back on the Field: Kasia’s Story of Resilience
Kasia Rodriguez was just seven years old when she was diagnosed with juvenile myositis. What began as a childhood diagnosis quickly became a life-changing journey for Kasia and her family. Over the years, Kasia faced periods of stability and seasons that were much harder. Her mom, Katie, shared that Kasia struggled through several challenging years […]
Finding Strength: Rachel’s Story
This family story was originally shared with Cure JM and remains part of our community’s collection of Stories of Hope. Each JM journey is unique, and families’ experiences may change over time. Rachel was a regular seven year old. She loved activity. She was filled with vitality. But right before she turned eight, she began […]
Grandparents at the Heart of Cure JM: Our Vision for 2026
Grandparents play a vital role in the Cure JM community. Your love, advocacy, generosity, and steadfast presence have helped strengthen families and move progress forward for children living with juvenile myositis. In this special message, Jim Minow, Executive Director of the Cure JM Foundation, shares his heartfelt gratitude for the Grandparent Alliance and outlines five […]
My Mission, My Impact
We are continually moved by the creativity and unwavering passion that our families exude in their DIY fundraisers that make our mission possible. My Mission, My Impact is dedicated to spotlighting some incredible events and fundraisers that breathe new life into our continued mission. The families featured have channeled their creative energy and talents to […]
DIY: Joy and Liv’s Pickleball for a Purpose
Inspired by her daughter Liv and a love of pickleball, Joy created an annual tournament to support Cure JM. What began as a simple idea has grown into a community-driven fundraiser now entering its third year. In the Q&A below, Joy reflects on what inspired the event, how it has evolved, and the moments that […]
Cure JM–Supported Study Advances Understanding of Juvenile Dermatomyositis
What this study is A newly published study in Annals of Rheumatic Diseases used biosamples supported by Cure JM Centers of Excellence and the CARRA Registry to analyze nearly 3,000 blood proteins in children newly diagnosed with juvenile dermatomyositis (JDM). Researchers examined samples collected at diagnosis and again six months after treatment began to better […]
Jim’s 2026 Resolutions
Dear Cure JM Families and Friends, As we begin 2026, Cure JM is focused on translating momentum into measurable progress for families affected by juvenile myositis. The year ahead will be guided by four clear resolutions, each grounded in outcomes we can track, programs we can strengthen, and areas where focused investment can accelerate impact. […]
Finding Cure JM: A Turning Point in Jessica and Marlowe’s Journey
In January of 2020, Marlowe’s parents were giving her a bath. She was only three years old at the time. They were alarmed, however, by the overwhelming amount of hair falling from their daughter’s head. They quickly took her to the pediatrician, only to be told it was a fungal infection. They were referred from […]
December Town Hall – Live from Giving Tuesday
This Giving Tuesday, families and supporters joined us for an exciting update on the breakthroughs accelerating JM research and care. Executive Director Jim Minow walked through the newest developments in emerging therapies, clinical trials, and next-generation CAR-T approaches. Dr. Brian Feldman outlined why many clinicians believe we are entering a collaborative breakthrough era for JM […]
JAK Inhibitors: A Promising and Evolving Tool for Treating Myositis
Over the last 2 decades, JAK inhibitors have emerged as a powerful tool for treating autoimmune diseases. The field is still evolving, with researchers looking for ways to improve efficacy and safety. As part of Cure JM’s ongoing conversations with leading experts in juvenile myositis, in March of 2026, Dr. Susan Shenoi joined us to discuss the […]
Paying It Forward: How Research Gave Lucy Her Childhood Back
When five-year-old Lucy was diagnosed with juvenile dermatomyositis in March 2022, her parents’ world shifted overnight. Once a bright, fearless child, Lucy suddenly faced a medical landscape filled with IV pokes, blood draws, methotrexate shots, MRI machines, and long hospital stays. For months, life revolved around IVIG infusions lasting six to eight hours each. The […]
Breaking New Research: What You Need to Know
In our November Town Hall, “Breaking New Research: What You Need to Know,” leading pediatric rheumatology experts Dr. Susan Kim, Dr. Sara Sabbagh, and Clinical Research Coordinator Tyler Sorensen share highlights from the latest advances in juvenile myositis research and care presented at the American College of Rheumatology Annual Meeting—the largest gathering of rheumatologists in […]
Recorded Live from the American College of Rheumatology Convergence Conference
The Cure JM Virtual Town Hall streamed live from the American College of Rheumatology Convergence Conference—the largest gathering of rheumatology experts in the world. During this special session, the Cure JM team shared real-time updates from the front lines of cutting-edge Juvenile Myositis research. Top clinicians and researchers discussed the latest discoveries and how they’re […]
September 2025 Town Hall – TRANSFORMING CARE OVER THE LAST 35 YEARS
Dr. Feldman paints a ”then vs. now”’ picture of progress over the past 35 years, when JM care was fragmented and inconsistent, versus today’s coordinated approach. He discusses how these efforts are helping bring clinical trials from the research bench to the clinic exam room faster and accelerating real-world improvements for kids and families living […]
Cure JM Backed NATA Project Finds New Way to “Turn Off” Myositis Inflammation
Backed by funding from the Cure JM Foundation, scientists at the UK’s Nucleic Acid Therapy Accelerator (NATA) are creating tiny medicines that press the “quiet” button on the immune system’s mistaken alarm that causes myositis. How Is the Immune System Misbehaving in JM? Think of your immune system like a safety alarm. Interferon beta is […]
Erin and Madi’s Story: Finding Hope at the Cure JM Family Conference
In February 2023, Erin Hicks and her daughter Madi faced a life-altering moment. After a visit to the National Institutes of Health in Seattle, Madi, a vibrant 12-year-old soccer player from Kansas City, Missouri, was diagnosed with juvenile dermatomyositis (JDM). “We walked out feeling overwhelmed and lost,” Erin recalls. Research fueled panic as Madi’s condition worsened, her energy fading on the soccer field. Hope was slipping away.
Ellen Stream’s Story: Walking and Quilting for JM Families
Ellen Stream’s love for her granddaughter, Brooklyn, fuels her commitment to the juvenile myositis community. When Brooklyn was diagnosed with juvenile dermatomyositis (JDM) at two and a half, Ellen faced a wave of fear. Would Brooklyn run and play like other kids? Could she enjoy school, sports, or friendships without the weight of infusions and flare-ups? Those early days brought uncertainty, but Ellen and Brooklyn’s other grandmother built a support system across miles, showing distance doesn’t dim love.
Tapering Medication
Cure JM hosted a special Town Hall featuring Dr. Kaveh Ardalan, Co-Director of the Duke Children’s Myositis Center, a Cure JM Center of Excellence. The session focused on the critical topic of tapering medications in the treatment of juvenile myositis. Families gained practical insights on managing infusions, flares, and daily medications, and had the opportunity […]
Cure JM Researcher Zeroing In on Why Inflammation Rages—and Muscles Don’t Heal
Cure JM is proud to fund pioneering research by Dr. Sara Sabbagh at the University of Wisconsin, who is working to solve one of the most urgent mysteries in juvenile myositis (JM). Why does inflammation spiral out of control — and why can’t muscles bounce back like they should
Resilient Parenting
Parenting a child with a rare disease comes with unique challenges—but you don’t have to navigate them alone. Join us for a powerful and practical Town Hall event with Ronda Thorington, MA, LPC, a Licensed Professional Counselor and Parent Coach specializing in supporting families facing medical uncertainty. The evening will include: A Guided Introduction to […]
Why I Walk: Steps Toward a Cure with Sammie Fish
Sammie Fish was 14 when juvenile dermatomyositis (JDM, a rare form of juvenile myositis (JM) changed her life in 2017. A doctor’s warning that she might never reach remission, tied to a lifetime of medication, shook her world. But Sammie, now 21, didn’t back down. Today, she’s a college grad, a new teacher in her dream job, and Co-Chair of Cure JM’s Ohio Chapter alongside her mom. She walks for herself, for kids like her, and for a cure. That’s why hundreds of Cure JM families and friends across the nation join Walk Strong, because every step pushes us toward a JM-free future
Cure JM 2025: The Road Ahead
Hear a Critical Update from our Executive Director and learn more about WHY and HOW we Walk Strong Together. Featuring Cure JM Executive Director, Jim Minow, Director of Development and Community Engagement, Shannon Malloy, Board Member and Southern California Walk Chair, Zack Harrison, and Chapter & Walk Manager, Nicole Ryba.
Tips for Detecting and Navigating JDM Flares
In February, Dr. Turnier and Dr. Sabbagh presented an informational Town Hall for JM families. Catch It Early, Control It Faster: Discover expert tips for spotting and navigating Juvenile Dermatomyositis (JDM) flares for better control and brighter outcomes
Raise Funds for a Cure with Facebook
Protected: Development Writer- Cure JM Foundation
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Love Letter to a Grandparent
Dear Grandma and Grandpa, I miss you and really wish we lived closer to each other. I love when you send my mommy pictures of the cats that hang around your house. They remind me of all the fun I have when I get to visit you. I wanted to let you know I had […]
2024 Year in Review – 12 Milestone Moments
2024 has been a momentous year for life-improving progress in research, clinical care, and empowering support and education. We invite you to join us in reflecting on the moments that made 2024 our best year together yet! January – Brought the Cure JM National Family Conference connection and education to the local level through Cure […]
Unlock the Secrets Within Inside the Cell – Discovering the Key to New Treatments & Cures
Join us in hearing from Dr. Turnier and Dr. Neely as they dive into the cutting-edge world of cellular research, where breakthroughs are paving the way for innovative JDM treatments. Explore how understanding the intricate workings of cells is revolutionizing medicine and bringing us closer to life-changing solutions. Join us on this journey of discovery […]
Why I Fundraise
Rebecca Karsten– “Hello! Welcome to a wonderful community that even though we never wanted to join; we are now so happy to be part of. Our daughter was only 2 when she was diagnosed with JDM and we got connected almost immediately through the website and family support networking. The first few months, other parents […]
Love Letter to a Grandmother
Dear Mom, The past two years have been like none I could have imagined. When CeCe was diagnosed with JDM and her life as a normal child ended; I forgot how to breathe. For the past two years, I’ve been holding my breath. I’ve held my breath through over 107 methotrexate injections, 23 hospitalized infusions, […]
Emma’s Story of Hope – A Tale of Life-Changing Care
At 12 years old, Emma’s world was turned upside down. An energetic cheerleader who loved spending time with her friends, she suddenly found herself constantly fatigued, her muscles weak and aching. What began as mild discomfort quickly escalated into something far more serious.
A Guide to 2nd Line Treatments and New Treatments on the Horizon
Hear from Dr. Susan Shenoi on how to unlock the knowledge you need to make informed decisions about 2nd line treatments and the promising new therapies on the horizon. In this town hall, you will understand the next steps in your treatment journey, and be empowered with the latest insights and options. Dr. Shenoi’s town […]
Understanding Calcinosis in JM: Advances in Treatment and Research Results
Dr. Christian Lood is a professor and researcher who studies autoimmune diseases, focusing on a condition called juvenile myositis (JDM) that affects kids’ muscles and skin. He works with a group of doctors and scientists at the University of Washington and Seattle Children’s Hospital to find better treatments for children with JDM. At the October […]
JDM 101: Lo Que Los Padres Necesitan Saber
Únase a nosotros para escuchar al Dr. Torres. JDM 101: Lo Que Los Padres Necesitan Saber – Prepárate con el conocimiento esencial para enfrentar la dermatomiositis juvenil (JDM). Esta guía ofrece a los padres la información clave necesaria para comprender, manejar y abogar por la salud de su hijo. In English: Join us in hearing […]
Required Minimum Distribution
You can send your Required Minimum Distribution (RMD) to a charity using a strategy called a Qualified Charitable Distribution (QCD). A QCD allows individuals aged 70½ or older to donate up to $100,000 per year directly from their Individual Retirement Account (IRA) to a qualified charity, without having to count the distribution as taxable income. […]
Grandparent Alliance
What is the Grandparent Alliance? We are grandparents of a grandchild living with juvenile myositis. Our mission as grandparents is to learn about juvenile myositis and support each other so we can support our grandchildren and their families. We also help advance Cure JM’s mission to give our grandchildren the best shot at a bright future ahead. […]
Grandparent Giving
Supporting Cure JM: A Grandparent’s Guide to Making a Difference As grandparents, your love and support are the bedrock of your family’s strength. You provide wisdom, guidance, and an abundance of love, all of which make an incredible impact on your grandchildren’s lives. At Cure JM Foundation, we recognize and appreciate the vital role you […]
Unveiling the Future of Hope
This expert-led presentation is for parents about how to help their kids and themselves when their kids express high levels of emotional distress. Our presenters will talk about ways parents can calm themselves, share tips for talking to kids with age-appropriate information, and know when to find help from a professional. There will be a Q&A session immediately following the presentation.
Parent and Teen Mentors
Feeling Lost After a Myositis Diagnosis? Find Support with Cure JM Mentors! Cure JM is a strong community – a “Family of Families” – and we know how overwhelming a new myositis diagnosis can be. That’s why we offer our Cure JM Mentor Program, connecting you with experienced individuals who have walked a similar path […]
Cure JM Partner Researchers Unveil Three Major Breakthroughs
Last year, Cure JM and a team of collaborative researchers received a prestigious $2 million grant from the Chan Zuckerberg Initiative to advance our understanding of juvenile myositis (JM). The goal? To discover new markers in the blood that could lead to more precise, personalized care for children with JM. We are excited to share some of the early results from this research
Cure JM-Funded Researcher Uncovers New Biomarkers
With your financial support, Cure JM is proud to have funded Fionnuala McMorrow, a Postgraduate Research Student in the Department of Life Sciences at the University of Bath, to embark on a critical research project. Fionnuala’s team analyzed blood samples from the UK to investigate two specific biomarkers (anti-CCAR1 and anti-Sp4) recently identified in U.S. patients with JDM and related conditions
Walking Strong – Empowered by Unity
Like other teens new to the JM journey, Catie Beth Caldwell and Madi Cook were two individuals who felt alone at the beginning of their journeys. Catie Beth was diagnosed just before the Covid-19 pandemic took hold of the world as we knew it. With this came feelings of isolation and loneliness. These emotions were commonplace for many teens but were only compounded by teens new to a rare disease diagnosis. These first years of the “new normal” were difficult to navigate.
Breakthrough Discovery: Misbehaving Mitochondria Linked to Juvenile Dermatomyositis
The generous support of our community has been instrumental in funding groundbreaking research this year, led by Dr. Christian Lood at the University of Washington and Cure JM’s Center of Excellence at Seattle Children’s Hospital. Dr. Lood’s team has identified calcified mitochondria in the muscle tissue of JDM patients with calcinosis – a finding that sheds new light on understanding JDM
FAQs about the RESET-Myositis Trial for CAR-T
1. What is Cabaletta’s RESET Myositis trial? RESET-Myositis is a phase 1/2 clinical trial being conducted to evaluate the effects of the investigational cell treatment CABA-201 in patients with dermatomyositis (DM), antisynthetase syndrome (ASyS) and immune-mediated necrotizing myopathy (IMNM) who have active disease. Patients with juvenile myositis and dermatomyositis are eligible to apply. 2. What […]
The Carpenters turn Lemons to Lemonade!
The Carpenter family hopes their efforts will raise awareness for Cure JM and bring hope to families like theirs.
The community went above and beyond in showing their support for the lemonade stand.
The 1000 cups with lids the Carpenters ordered quickly cleared out as more and more lemonade was sold!